2011

Firstly Happy New Year all! My daughter turned 3 last month which means it has been just over 3 years since Dad was diagnosed with MM.

Its been quite a while since my last post, Dad came off the Velcade after 2 cycles proved to be 2 too many. The after effects kept him in bed for weeks afterwards with crippling pains and tingly feelings in his hands and feet.It is supposed to be one of the most effective but expensive forms of treatment for MM. If he has received this treatment when he was first diagnosed he may have had a better tolerance towards it as he was healthier but at this stage and age! his body has not been able to cope with it. Anyway they have put him back on the original combination of drugs he was given when he was first diagnosed.

Its hard to tell how Dad has been doing recently, he has just learnt to get on with things and not really talk about it too much. The pain in his back came back a few months ago which meant he decided to go ahead and have some more radiotherapy which he really really didn't want to do. He had 6 rounds in 7 days...im not sure if it worked because it has been a fair few weeks now and the pain is still quite intense. He is allot more tired recently because of it and is continually taking morphine to help with the pain..I think we will need to discuss this in more detail with the doctor when we see her in a weeks time but i am praying that having the radiotherapy was worthwhile and the pain will just ease soon!

On the more positive side, the past 6 months (despite the Cancer) have been good, Dad has been working as per usual, has gone off certain foods, but is eating healthy portions, he has lost a few teeth but that doesnt stop him smiling, his hair just keeps coming back which is fantastic - he turns 70 this year and he's got a family that adore him so he's got plenty to live for and he knows it :)

Dads progress

Dads last stint in hospital lasted 2 days which wasnt too bad, he was given antibiotics again to treat the infection and sent home. His doctors havent yet started his treatment up again, as the reactions he has had have been pretty severe. The swelling in his feet comes and goes . At the moment he is having tingly sensations in the soles of his feet only, he said it isnt as painful as it was initially. His skin has darkened quite a lot too, just like it was when he was having chemotherapy the first time round, but this time he hasnt had it for a few months. His teeth have gotten pretty bad too from all the treatment, but it doesnt seem to bother him - hes still smiling and still pretty active. He seems to be shaky on his feet after he has been sitting for a while but once hes up and about hes fine. He is still working full-time, and yesterday he was doing some gardening, setting up a bonfire and playing with his grand-daughter. He amazes me how he is able to put his condition to one side and just carry on enjoying his life. Despite the seriousness of his condition and all the painkillers he takes on a daily basis, at 69 years of age he is an example of how inner strength,family, and a lot of distractions makes life with myeloma not as tragic as I thought it was..

Dad Admitted again...

Dad has been admitted this morning. He had a slight temperature last night and called the NHS helpline this morning, who said it was probably best if he came in. After an initial assessment he has been moved to another unit and is currently waiting to be seen by the haematology team. He has not been on the velcade for about a month now due to swelling one of the drugs caused on his leg. After 4 weeks the swelling has now come down but he is still experiencing some pain in that leg. On my way to the hospital now...:(

Velcade

The Velcade has been put on hold for a few weeks again, as my Dad has had some more swelling on his legs. However this time its not going away. Both legs are affected but the right leg is pretty bad. He has had a scan to check or blood clots and the heart, lungs and everything else is clear. He has been given something from his GP to help drain the fluid but that doesn't seem to be doing anything. Some of his other drugs have been stopped too, especially those which cause drowsiness, as he managed to fall asleep during one of his appointments - which is really worrying. He has been booked in for a scan in two weeks time of his stomach, something to do with fluid travelling to and from his leg from his stomach. It has been making some strange noises like indegestion but very very loud. The swelling is causing him alot of pain and nothing really seems to be helping, he keeps it elevated for most of the day and tries to keep the weight off from it..hopefully it will go down soon, and more importantly the doctors work out what has been causing it,so that it doesnt stop his treatment from being held up for much longer.

Still on the Velcade

Dad is still on the Velcade, but after some more side effects, the dosage has been reduced a 2nd time in the past 2 months.

He is getting alot of pain in his bones, he describes them as strong cramps in his legs. Yesterday he said that every bone in his body was hurting. The X-Rays have come back clear, but he his doctor has suggested a CT scan to try and understand where the pain is coming from. After every 4 treatments the pain hits him shortly afterwards. He is having some bad days, but is still doing pretty great - still working! full time..and he turns 69 this year! My mum is visiting her Dad next month and for the first time will be away for a whole month; she is really worried about leaving him and has cooked and frozen a serious amount of food. Dad is actually quite looking forward to it ( the break not the food :) He doesnt know that me my husband and my daughter will be moving in with him to keep him company. Im sure it will come as a nice surprise.

The clocks have gone forward today- A bit of sunshine does everyone the world of good.

Velcade Cycle 2

Dad was actually released after 5 days and not 2 weeks. As he was feeling a little stronger he was given Chemo just before he left! And was back at work after the weekend. AMAZING. There was no hanging about and he is feeling and looking great might I add.

I have been reading up on various on quite a few different things recently when I came across a product called Mel- Life Honey. Now the site makes some pretty amazing claims about its ability to avoid patient’s counts from dropping during chemo, and how it has helped people to recover from Cancer. Clinging on to hope I bought 2 jars at £37.50 a jar it wasn’t cheap but if it worked id buy him an oceans worth. Anyhoo he spoke with a Doctor yesterday and they instructed him not to take it as there were not sure how it would work with the many other drugs that he is taking……Is it worth the risk after all it is only honey! But the answer is NO. His is liver is not at 100 % and no one knows for sure if it will do any harm.

If anyone else does happen to try this I would be interested to hear your experiences with it.

A&E dash

We rushed dad to A&E this weekend with a temperature of 103. He had been complaining about a sore throat for a few days and said that it felt like he had lacerations in his throat. He had his chemo passport with him so we were rushed through within 10 minutes of arriving. As there were no beds in Oncology he was placed in the Acute Assessment Unit ( after 6 hours on an uncomfortable A&E bed). After 15 hours his temperature hadn’t come down and went up to 105 even with all the antibiotics and fluids he was being pumped up with. He has not been able to eat for 3 days now because of his throat and gags even when he tries to drink a tiny drop of water, it turns out the sore throat was a bad case of thrush.

He has a conditional called neutropenia which is very common apparently for people having chemotherapy, so has been given injections into his stomach to help speedily create white cells, and morphine swabs to help with the pain in his throat.

He has only had one course of Velcade so far. I wish he had taken it easy after the treatment but he doesnt want to be beaten by MM and refuses to let it. It is important for him to realise that although he is fighting this, he needs to listen to his body too and let it heal. He hates being in hospital and was hoping he would be sent home with a few drugs but it looks like it will be more like 2 weeks before they let him out.